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Developing an Edema Clinician-Reported Outcome Measure for Nephrotic Syndrome
Debbie S Gipson1, Maisha Pal1, Hailey Desmond1
1Department of Pediatrics/Pediatric Nephrology, University of Michigan, Ann Arbor, MI, USA.
Glomerular Diseases
|October 30, 2023
Summary
A new clinician-reported outcome measure was developed to reliably evaluate edema in patients with nephrotic syndrome. This tool standardizes edema assessment across multiple body parts, improving clinical evaluation.
Area of Science:
- Nephrology
- Clinical Outcomes Research
Background:
- Edema is a frequent symptom in proteinuric kidney diseases, yet standardized evaluation methods are lacking.
- Current clinician-rated edema measures lack validated reliability and validity.
Purpose of the Study:
- To develop a reliable clinician-reported outcome measure (ClinRO) for edema in nephrotic syndrome patients.
Main Methods:
- Conducted a literature review of existing edema assessment tools.
- Recruited clinical experts for concept elicitation and cognitive debriefing.
- Employed qualitative analysis and iterative refinement for measure development.
Main Results:
- No existing clinician-rated edema measures demonstrated supported reliability or validity.
- Developed the Edema ClinRO (V1), assessing edema severity across multiple body parts.
- Created an online training module and assessment tool to ensure interrater reliability.
Conclusions:
- The Edema ClinRO (V1) provides a standardized method for assessing edema in nephrotic syndrome.
- The measure includes a training module to ensure consistent administration.
- Further studies are planned to validate the reliability and efficacy of the Edema ClinRO.
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